Misdiagnosed thyroid and mental health.

Hello,

My daughter has just been diagnosed with under active, she has had endless symptoms for some time, having under active myself I have requested on many occasion's she is tested, her symptoms I can recognise, tests come back normal we are told due to her depression she has been diagnosed with Bipolar and BPD, as she was getting no better and her fatigue, joint pain etc was getting worse, they have referred her for possible CFS which we requested, the hospital seeing her requested full blood tests, she then gets a call from the doctor asking to see her and tells us she has a under active thyroid, and has had for some time, they started her on 50, and is waiting for a scan on her neck, she has had a swollen neck for some time too, a scan 10yrs which came back fine. My main question is has anyone been diagnosed with mental health issues when it was down to a under active thyroid, help welcome. Thank you.

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  • Here are a few links. Please, do not read them until you feel ready, they could be upsetting:

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    thyroiduk.org.uk/tuk/get_in...

    There are many more papers, stories, case reports, personal experiences, ...

  • Who still recognizes ''psychiatric manifestations of Hashimoto's Thyroiditis''.

  • I havent personally but am afraid it does happen! One of the symptoms of hypothyroidism is low mood & there have been cases of people being admitted to psychiatric wards as a failing thyroid if keft untreated can seriously affect your mental health. Many of these patients suffering with severe depression cleared up once their thyroid was treated. A psychiatrist should be well aware of this link -whether they are in reality I dont know!!!

    With CFS one of the first things they do is screen for hypothyroidism as the symptoms of CFS & hypothyroidism are very simular. I was diagnosed with cfs before my thyroid was treated......the problem went away once my thyroid was treated but if course the medical fraternity denied they had misdiagnosed me!!

    Hopefully your daughter will start to get the treatment she really needs & start to feel better.

  • Katbar,

    Undiagnosed hypothyroidism can manifest as mental illness but some drug treatments including Lithium Carbonate for bipolar disease can cause hypothyroidism. Drug induced hypothyroidism will usually, but not always, resolve when the drug treatment stops. If your daughter's mental illness is caused or exacerbated by low thyroid it should improve once she is optimally medicated.

    hypothyroidmom.com/when-thy...

    google.co.uk/search?q=when+...

  • has anyone been diagnosed with mental health issues when it was down to a under active thyroid

    Yes, mental health issues and an under active thyroid commonly go together. One of the thyroid hormones produced by the body is T3. The brain is the biggest user of T3 in the body (I think), and when the brain has too little or too much T3 all sorts of mental health problems can arise.

    If your daughter has had hypothyroid symptoms, and a swollen neck, for a long time then I think it is shocking that she has been fobbed off with a mental health diagnosis and a diagnosis of CFS. I'm pleased that the hospital identified her hypothyroidism before lumbering her with the CFS diagnosis, because once that gets recorded on her notes every physical problem she has from now on will be dismissed as part of her CFS diagnosis and she won't get treated. So make sure that diagnosis is over-ridden!

    Obviously there are no guarantees that your daughter's mental health problems will go away when correctly treated. But there is a good chance that she will improve immensely and there is a possibility she may get completely better.

    Deficiencies in minerals and vitamins can cause or exacerbate mental health symptoms. So make sure that your daughter's levels of iron/ferritin, vitamin B12, Vitamin D and folate are measured.

    Make sure your daughter asks for copies of the results including reference ranges. When she has them she should copy them into a new post on here and ask for feedback. Doctors frequently prescribe doses of nutrients which are far too low to repair a deficiency.

  • Thank you, she has not been diagnosed with CFS yet, we are just looking for answers as every time there is something wrong with her they put everything down to mental health even physical symptoms. She was in hospital with a severe alergic reaction, and was tested for different Autoimmune deseases, , all came back normal. Her recent Thyroid test indicated she had a low vit D, but the doctor did not feel she needed treatment for this he was more concerned about the Thyroid.

  • Low Vitamin D makes people feel terrible. One of the commonest symptoms with the condition is muscle and joint pain. And that can arise even with a level which is considered to be "normal".

    I don't know if you are aware of the following :

    1) Patients are entitled to copies of their blood test results by law, but there will usually be a small charge for paper and ink.

    2) Prescriptions are sometimes given to treat nutrient deficiencies, but the doses provided are often too small to fix the deficiency. It is easy to buy suitable supplements at a reasonable dose without a prescription. Amazon, Ebay and supplement sites sell them. Pharmacies will also sell things like prescription-strength iron supplements without a prescription.

    3) It is possible (and legal) to treat oneself for hypothyroidism in the UK. Thyroid hormone products can be bought online from sites abroad without a prescription. What to buy and reliable sites to buy from can be discussed if your daughter doesn't do well with the standard treatment (but most people do well).

    4) Blood testing can be done privately (for a fee) without involving a doctor or getting approval from anyone. It is ordered online, the necessary kit is sent out through the post, the patient pricks their fingers to supply a blood sample, and then the sample is sent back through the post. Results are supplied by email.

  • I wrote :

    What to buy and reliable sites to buy from can be discussed if your daughter doesn't do well with the standard treatment (but most people do well).

    I just wanted to point out that when I said this can be discussed, I meant on the forum, not with your doctor (who would probably not approve).

  • hypothyroidmom.com/mental-d...

    Am hoping the above link will be helpful - Mental disorder or Hypothyroidism ?

  • Thank you for your reply, my daughter does hope it was down to the thyroid but trying not to get her hopes up too much in case it is still the case for her.

  • I would also look at her levels of B12 - VitD - Ferritin and Folate. All need to be optimal rather than bumping along the bottom of the range. Just being low in iron can make people appear depressed - not enough oxygen circulating. Docs are too quick to reach for the prescription pad when sometimes the diet could do with a boost or absorption is poor - then a good range of supplements after testing.

    Are you familiar with Kelly brogan - there is a website in her name with some good articles :-)

  • Yes I was well over twenty years ago. I had a baby now nearly 27. When I had a normal blood test it came back vitamin deficiency so I got vitamins. That still did not make it better. I went on to fall pregnant again five months later had my baby and getting more tired hair falling out. They put is all down to postnatal depression. This went on and on trying to shove depression tablets down my mouth till one night I was in hospital waiting for an op as I had a cyst on my ovary. I was reading a magazine and it had an article about the thyroid it described me to a t.

    I had my op and still felt naff so I went back to the Drs and said I think I have a thyroid problem. I was told basically it was in my head I was to young to have a thyroid problem but to shut me up they tested.

    Well it wasn't long before I got a call to see the Dr. My thyroid was extremely low. I was furious but I went I was told nothing about it. I had to start on 100 mcg and be tested in six to eight weeks.

    Now I know that's a high dosage to start on but it was working my mane thing was you could see my hair growing back I had two levels of hair and it was getting thicker yippee. I was 21 my depression was lifting as I was not so tired.

    It just goes to prove the ignorance of drs from now to then still they misdiagnose.

    I hope your daughter feels better soon. This must of been a really trying time for you both.

  • It's all down to the 'modern' guidelines. Older doctors who were trained in clinical symptoms alone i.e. listened to patient and took note of temp/pulse and symptoms, prescribed NDT (natural dessicated thyroid hormones for their patients - if they didn't get better it was down to something else. When levothyroxine and blood tests were introduced the older doctors were told only blood tests would prove hypo/hyperthyroidism. The older doctors who protested that their patients needed thyroid hormones and diagnosed/prescribed as they were taught as junior doctors were pursued and licences withdrawn (or they resigned due to the strain). It was our loss of their expertise. There is a book that can be had through Thyroiduk.org.uk called Tears Behind Closed Doors by Diana Holmes which is worth reading.

  • Hi, It still is going on, I have asked for all her thyroid test results going back from 2007 some of them only have one or two things on them, not a full result which leads me to think she did not get a full Thyroid test, pleased to hear you did get some answers it must have been a terrible time for you, I cannot get a T3 test done for myself the doctors refused, they say they can tell is I need T3 I dont know how without a test, surely it it best to be well than not, less doctors time.

  • Don't listen to them, it's all baloney, but they think you won't know the difference. They all think their patients are stupid and ignorant.

    The thing is, they don't want to prescribe T3 because it's too expensive. That's one of the reasons they don't test FT3. Other reasons include : the test is too expensive, and they don't really understand what T3 does.

    But, you can get your own labs done, and buy your own T3. Many, many of us do that, because we got tired of waiting for a doctor to do something. You could do the same. :)

  • Yes I suffered depression, anxiety mood swings for years also with post natal depression. Had a terrible time until my early 30 when I began to realise it wasn't depression and anxiety there was something else going on. I managed to get some control over it for my daughter who was born when I was 26 but my thyroid declined and now I am medicated my depression and anxiety has gone. They tried telling me I was depressed again after the birth of my 3rd child but by then I knew it was something physical going on and stopped sertraline and began vitamins and supplements.. My mum would also say she thought it was hormonal with me as I suffered terrible heavy periods and major PMT. I would get highs and lows and they thought I was bi polar but no anti depressants really worked and I became immune to them. They kept putting me on maximum doses and I was like a zombie. I had extreme exhaustion from my mid teens also x

  • I look at my group of friends, family and associates and I know people from a wide and varied background who are all on anti-depressants for some reason or other. They can't surely all need them!

    I feel like there is a conspiracy to get everyone on anti depressants .

    I went to my GP last week and saw a locum about my cycle-related depression. I asked for hormone tests and he agreed, but not before telling me he thought it had nothing to do with hormones and I should be on anti depressants. Tedious but I'm getting the tests and as for interpreting them - I'll be doing that myself !

    Your daughter has been neglected by the system. She is lucky to have you looking out for her!

  • I don't know whether its true or not that doctors are paid 'extra' when they prescribe Anti-d's.

  • It can be a combination of getting paid for diagnosing mental illnesses, prescribing ad's and doctors possibly being a member of a medical company.

    Over here in finland the psychiatric who has written the guidance of how to treat mental health issues happens to be a board member of medical company that manufacturers the drugs he recommends.

    It's public information, but no one questions it.

  • I think that kind of 'sweetener' should be forbidden.

  • I believe funding points are higher for AD's than Levo 😊

  • Thanks Marz.

  • I can believe that Shaws! They are not exactly as free at prescribing thyroid meds. It does make you wonder.

  • There was a post a week or so ago in that it said that if you lived in a certain area that the doctors were paid if they diagnosed dementia - but then not to treat the patients. It has now been changed so that doctors will now be paid more money but will treat!!!

  • That's pretty shocking. I mean dementia is serious and does need diagnosing and treating but so do many other conditions. Do you think big pharma are behind that then? I mean it would give them free rain to trial and prescribe pretty potent medications. At the same time other serious psychiatric conditions are ignored such as schizophrenia where medications for that (and assuming many other conditions) are extremely limited.

  • They can't accept that there could be depression like symptoms that have nothing to do with real depression. I firmly believe real depression is actually relatively rare.

    Depression is a symptom of many illnesses but when the illness is treated depression goes away. So it can't be real depression can it!

    These days sorrow lasting for two weeks is considered depression(in US and over here in finland they try to get it approved too) So you lose your family in tragic accident and it's an illness to be sad.

    Being a human is considered an illness. Great.

  • I agree but also being physically Ill for a long time generally causes depression as you can feel trapped as if you can never get well it can be a vicious circle sometimes. I think I was depressed though but I also expressed many symptoms that were physical which were just put into the umbrella of mental illness. They put me on beta blockers at one point for heart palpitations and panic attacks also sleeping pills for insomnia but looking back think my thyroid was going up and down and that's what was causing it all. I had one check on vitamin levels and that was my iron and nothing else and I was very low on that. You would think a full vitamin and minerals blood test at least would be standard before they even considered prescribing anti depressants.

  • In that case depression is still a symptom or outcome. But very natural response for not getting proper help. It's not an illness, it's just a response.

    Whether it requires treatment or not is another question.

    I agree certain type of tests should definitely be run before trialing ad's. In my eyes it should be the last resort when everything else is ruled out.

  • Yes it was for me but I cannot say the same for everyone. My husband takes anti depressants and has for years but works full time, holds a job down. His is mainly down to abuse suffered in his childhood so I guess that is the route cause but something that can't be changed. I don't think there is any underlying medical thing with him. It's quite complexed.

  • Yeah there are several reasons.

    Like your husband, he probably has had some sort of PTSD at some point of his life because of the abuse which could have destroyed t3 receptors in his brain.

    Technically it's not hypothyroidism, and can't be measured, but T3 could have brought the same relief as ad's.

    But that's the point ad's being the last resort. If you can't find a cause or any illnesses then taking ad's isn't the worst thing one can do, if it helps one.

    In his case it is not just an emotional response, it's stress related and more permanent damage.

    There is nothing wrong to use ad's if it helps. But it's wrong from doctors to push them just to get rid of patients.

    We are often given them and told to hang on there without any additional help. Ad's don't necessarily even work without therapy!

  • Yes I agree it is stress related but then therapy services are often limited also. I agree though it is always secondary to some other cause be is psychological through negative experience or physical through something else going on.

  • This is more common than most of us would like to think. I was diagnosed with bi-polar & prescribed medication for it, my saving grace was the fact that I already had a diagnosis of a thyroid condition therefore I couldn't take Litium, my Sister however, was put on Litium for 12 years, then they changed her diagnosis to personality disorder, took her off Litium in May, she took a nosedive in her mental health & in August she hung herself in the psychiatric unit, if you think the diagnosis is wrong, then argue your case, It took me almost 3 years to have the bi-polar diagnosis removed from my medical records.

  • I am so sad to hear your story, we maybe wrong and she will still have mental health issues, but she has never been admitted to a hospital and I know she has very bad times, but for some reason I dont know what it is that makes me feel it is something else going on, ie the Thyroid, she may suffer from some depression but not what they diagnosed her with. I have questioned it being more hormonal too as mentioned by Helena she did go through puberty very quickly and came with it all these down sides, being self conscious etc.

  • They are mental health issues but the route course is the thyroid dysfunction. Getting doctors to tie the two together is another thing all together. My mum is under medicated and on anti depressants now but I am convinced if she were optically medicated and worked on her vitamins her depression would go. I am in no way saying that everyone with depression has thyroid problems though but quite often there is some sort of real underlying physical cause. Doctors just happily throw pills at you, not quite sure why. When you are a teenager and don't know any different you think that's the answer. You don't even think there could be a physical cause x

  • Unfortunately it is rare for FT4 and FT3 to be tested these days and I think it is a pity they ignore these two which would give a clearer picture than TSH alone.

  • Your poor sister - there have been a few people who've taken their lives, either because they are misdiagnosed or who cannot recover on levothyroxine . If we don't have knowledgeable doctors we are lost.

  • Suggest you ask GP to check her levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also have she had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

    TPO is rarely checked and TG almost never checked. More common to have high TPO or high TPO and high TG, but negative TPO and raised TG is possible, though much rarer. There are a few members on here that have this, often they have struggled to get diagnosed.

    Also consider coeliac/gluten intolerance as possible cause of anxiety or depression - here is a link about this

    ncbi.nlm.nih.gov/pmc/articl...

    Lots with Hashimoto's also have hidden gluten intolerance.

  • She had a Gluten test done in Boots came back ok, test done last week at Addenbrookes showed allergic to wheat, they did a antibodies blood test as our GP had not done this, waiting for results, she has a low Vit D, Dr did not feel she needed treatment for this, my Mum was know as a B12 patient having injections, so this does follow in the family.

  • Blood test for coeliac is notoriously unreliable. Also it will never pick up non-coeliac gluten intolerance. Even though this can be just as serious.

    Cyrex test - only available privately is supposed to be pretty good, but very expensive.

    Best/cheapest is just to try it.

    Low vitamin D can make people feel dreadful

    "Could it be B12" by Sally Pacholock - film or book worth looking at.

  • I hope you sort it out for her, one major thing is that she has her mum on her side so you can fight for her. My mum was diagnosed as hypo and didn't put 2 and 2 together properly. I was suicidal a lot also.

  • Yes, I was diagnosed as depressed, and then CFS. I knew neither was right.

    Tat was a long time ago, but nothing has changed sadly.

  • I think thousands have been diagnosed with a mental problem and some have been in mental hospitals. I am not medically qualified but I believe its due to the guidelines, particularly in the UK, doctors have been advised not to diagnose someone until their TSH is 10. Elsewhere in the world it is when its around 3. Huge difference. Also the top of the range is around 5 and you could feel dreadful with a lower TSH but they dismiss the patient saying the are 'normal' (meaning the TSH isn't high enough to be diagnosed).

    In the past we have had members who have been diagnosed with mental health conditions and as T3 is the only active hormone and the brain contains the most T3 receptor cells we can be badly affected. Except the medical profession appear to be incapable of believing this. They have also been directed to only check TSH and T4 so the poor patient is unaware that their Free T3 might be negligible. If you are prescribed with levothyroxine and still complain, then you are given an anti-depressant instead of some T3. Also for any other symptoms we are given a prescription but not thyroid hormones.

  • Sure, I felt low all the time and was put on anti-depressants but they had no effect. I had to wait 10 years for my thyroid TSH to finally go out of range.

    My thoughts are, if you have thyroid antibodies then consider medication. Otherwise, find the cause before seeking treatment.

  • Hi Katbar

    your poor daughter this is awful and I can empathise completely .

    After years of symptoms of fatigue and chronic anxiety and many others, numerous blood tests reported back from my GPs as 'normal' I developed severe depression. After getting no relief from SSRIs I decided to seek help from a private psychiatrist who put me on some hardcore old type antidepressants. They took the edge off and enabled me to function a little better but the fatigue continued and had no real quality of life.

    During this period I was so severely depressed bordering on psychotic.

    I changed my GP surgery just by chance and a new GP referred me immediately for bloods and they came back out of range but still what most doctors would consider 'normal' e.g. TSH less than 10! Barbaric has been used to describe this practice and I would agree entirely. I also came back low vit D.

    Since being prescribed thyroxine my mental health is much improved and I am currently weaning off the awful ad's.

    I believe my mental health issues were all due to hypothyroidism and have suffered so much over the last 3 years.

    If I wasn't diagnosed this xmas the next avenue was chronic fatigue.

    I wish your daughter all the best and believe she will see a huge improvement. Good luck and much sympathy for your awful plight 😕X

  • Thank you for telling us your story, it is so encouraging to hear other people like yourself has proven you don't have depression, to be told you have Bi polar and PD is very upsetting, I could be proven wrong I am not a doctor, it is just my gut feeling and for my daughters sake I hope I am right., I know it is a long road ahead.

  • I fell ill with hypothyroid in 1994 , first a small lump in my throat that a friend noticed that didn't seem a bother & my blood tests were 'within normal' but within months I became very ill & utterly frustrated that all tests were border line at the lowest end of 'normal'. It took until almost 3 years to get treatment. I joined the British Thyroid Foundation & found the many stories of sufferers with similar problems. It gave me courage to insist on seeing a consultant again & get the treatment I needed.

    I remember a second consultant was called in to speak with me who, when reluctantly agreed to let me have Thyroxine said ' we don't know why but some women lose their depression when taking Thyroxine'. in my mind I never was depressed (depression is a form of mental illness) just extremely ill with Hypothyroidism. Also, I now require a 100 - 125mg to keep me well.

    A nurse I new had a son who changed personality & displayed very odd behaviour. Her GP wouldn't listen until it was obvious the boy was seriously ill - it turned out he was dangerously Hyperthyroid.

    Too little or too much thyroid hormone can cause real symptoms of mental I'll health. There is such a huge range between high normal & low normal & each person has their own level of 'normal'. I feel well when my blood tests are above the middle range of normal.

    I wish your daughter gets the help she needs.

  • Thank you for your reply, I am hopeful it has been down to Thyroid, although she was diagnosed a while back before her thyroid showed being low in a blood test, but i was never convinced and have a open mind, but already i am seeing a happier girl, i except it is early days and she can go a couple of weeks before she gets a low period, we will see how things go, if we can convince the Doctors it was down to the Thyroid along with hormones, she could look at coming off the depression meds, although this is scary too, it is something that has to be tried in time to be sure.

  • Yes all my Nephews supposedly have adhd and one has been diagnoised with Aspergers I have told my Brother (who is a Doctor that they need to get their thyroids tested). Parents, friends family members I have said to them" You should get your thyroid tested ands they usually reply " I have but the results were normal". It is difficult to get through to anybody as why should they believe me rather than a Doctor. I tried everything in my power to get my Parents to see the late Dr Skinner but the Dr wouldn't refer them, I managed to get the results of their blood tests results which showed they had underactive thyroids of course they were dismissed as "normal". It is so frustrating knowing that people are suffering and their lives could be transformed. My parents now have been diagnoised with dementia and spend most their time in bed. I am forever thankful I was lucky enough to see Dr Skinner and Dr Peatfield.

  • Answer yes - misdiagnosis is common - but once it gets in the wrong set of notes,

    medical tests done simultaneously are ignored - you end up with a label !

    You are lucky your daughter's symptoms have been recognised.

  • Hello, yes. I was put on sertraline and diazepam and diagnosed with anxiety at the onset of my thyroiditis last year then diagnosed depressed when I became hypothyroid. A chance blood test picked up my high tsh levels by then I’d had three psychiatric appointments.

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